Down syndrome Awareness Month

October is Down Syndrome Awareness Month. In the past I have blogged every day to raise awareness. Frankly, that is just not going to happen. I guarantee it. I'm 33 weeks pregnant and feeling every centimeter of it. I'm tired and chasing after a 2 year old is hard work. At least I'm honest people. I'm spent by the time I get home from work.

I think that Down syndrome has become a part of our every day life that I forget it's there most days. Did I forget that Harper can't walk yet? Hell no. But her burst of language makes up for it. Her sassiness makes up for it. She is who she is. And she WILL hit her milestones when she is good and ready to. And on her own terms.

With that said......I've had a few things happen to me lately regarding Down syndrome.


I was on a panel in August to speak to potential Genetic Counseling students. I have a great relationship with my genetic counselor and she asked me to be on the patient panel to tell prospective students my experience with genetic counselors. It was a fantastic opportunity and one that I took seriously. While I wasn't there to speak specifically about Down syndrome it was still my job to advocate and raise awareness. I was able to tell them how their job would impact a life. I felt like I contributed something to society and maybe helped a few students decide on their career path.



I've meet a few soon-to-be moms who may or may not be pregnant with a child who has Ds. Exciting right? Well, I have to take myself back to that time where is wasn't exciting and remember how I felt. It was scary. Both of these mom's do not have an official diagnosis. One is far enough along that she is going to wait until he is born. The other is just starting her second trimester and has testing options she hasn't decided on.  But it's hard for me to contain my excitement. Yep, excitement. To me a baby is a baby. Whether he/she has Trisomy 21 or not. That baby deserves to be loved and for someone to be excited about their arrival. I want those moms to see how happy Harper is and how happy Harper makes me, her dad, her family and friends. I wanted so badly to celebrate my pregnancy with Harper that I want these moms to be able to as well.

Over it. 

Really over it. 

Diva in the making 

This is the part of the post that has taken me the longest to write. I have drafts sitting waiting to be published but nothing came out right. I'm sure not sure I did it justice. Here goes....



Through Facebook, I have been able to keep in touch with Tanya, a friend of mine from high school. Tanya and her older sister Tina, had an aunt, Ruthie. Ruthie lived with them growing up. Ruthie had Down syndrome.

At the time I had no idea how much of an impact Ruthie would have on me and my family. I wish I could go back and tell my high school self to pay closer attention to Ruthie. I do have memories of Ruthie. She was at all the sporting events Tanya or Tina were a part of. I remember going to Tanya's house and Ruthie was there. She was friendly and funny and didn't make me feel awkward. She was one of the few people with Ds that I actually knew. You could tell she was loved and that she loved fiercely.

While I hadn't seen Ruthie in years I had thought about her often after Harper was born. Ruthie gave me hope that Harper would be loved and taken care of. Ruthie gave me peace of mind. She was a living testament to what I want Harper to be. She wasn't a burden to society. She was a blessing.

I've thought of her even more now that I'm pregnant. Ruthie was the older sister. Her younger brother loved her. Makes me have hope for that future that Harper and her little brother will have a special bond that will be unbreakable.

Not that long ago I heard that Ruthie was sick. I started to think about her more. Think about Harper's future. Would she live with her younger brother? Would she be an aunt? What does her future hold? In the beginning of September, Ruthie passed away. She passed away from a family who loved her fiercely. To quote Tanya, "Ruthie is the most amazing person I've ever known or loved." That my friends is what life is about.


As I write this I'm watching Harper on the monitor holding her baby doll while she should be sleeping and saying "hi" over and over again. She melts me. And I'm so proud that she is my daughter and excited to see what type of big sister she will be.

What's been going on.....

Well a lots been going on around here since I blogged last. I'll skip the apologies but this pregnancy has gotten the best of me.

Yep, 28 weeks tomorrow! Welcome to the third trimester! This little boy is due November 26th!

First things first, Harper is TWO!

We had a luau themed birthday party. It was adorable and Harper actually enjoyed opening the gifts. She was a little side tracked by the gifts but once we put all of the wrapping paper away, she realized she had some AWESOME gifts.

And here is a party belly shot....

And Harper's new obsession.....she has turned into quite the naughty girl.

Spread the Word to End the Word

On March 6th please help us to Spread the Word to End the Word. What word? The R word. Retard. 

The R-word is intended to be a medical label. Not a word to describe Harper. 

March 6th is the day to promise to stop using the word retard/retarded. I know that many of you have used this word without understanding how hurtful it can be. I'm guilty of it. But now that I understand the true meaning, I've stopped and you can to. Go here to sign the pledge to eliminate the demeaning use of the R-word. 

Harper is a person. Not a medical label. There are so many other words that you can use instead: dumb, crazy, silly, ridiculous. Choose your words wisely and with a loving heart. 

Have you signed yet? Do it for Harper and her buddies. But do it for yourself. You'll feel better once you sign it. And drop me a comment once you sign it so I can be proud of you too! 

You better sign it! Do it for me!

Milestones, crash of 2013, and patience

Harper has been busy. Kicking butt and taking names. She is growing up before my eyes. That is part of the reason I was so upset when my phone crashed. Along with the crash came tears because I lost some pictures of my precious girl.

Right before the epic crash of 2013, I emailed myself these.

Muffin face

Watch out Brewer. I'm going to get you with my mallet. 

Trying on glasses. Pray for me. H kept them on for about 2.2 seconds. 

Grandma O'Connell taught me how to put things "in." Even Sophie the giraffe can fit in the cookie jar. 

Sleeping on Daddy.

You can see there have been some milestones hit and some changes coming our way.

While my mom watched H on Monday she taught her how to put things "in." Or in Harper's world, shove everything you can into the small cookie jar that sings. You can imagine how upset she gets when the cookie jar is full but there is a naughty rattle sitting on the floor instead of in the cookie jar. Damn rattle.

Girlfriend has definitely found her sassy pants this week.

Insert picture of H being sassy. Oh wait, my phone crashed. Dang it. 

Harper had an appointment at the eye doctor earlier this week. It was quickly pointed out that Miss H is nearsighted (just like her mama) and needs glasses at a very young age as well (crap, just like me). Cue the wrestling of trying to pick out the appropriate frame.

I was actually trying to get a picture of the sample glasses while they were on Miss Sassy Pants, but the poor frames only stayed on her pretty face for about 4 seconds. Please pray for me my patience. I'm up for the battle. Bring it on new glasses!

The frames should arrive in about 2 weeks. Plenty of time for me to starting banking my patience away for the fights we are going to have.

Fingers crossed!

Growing Up Health guest post

In January I was asked to write a post for  Growing Up Healthy: A UW Health Kids Blog. I was honored to be asked and honored that the post has been so well received. You can read it here. 

Make sure you leave a comment and follow their great blog. Hopefully they will ask me to help again! 

Happy Sunday! 

Polar Plunge 2013

My last post resonated with a ton of you. Thank you for the emails and comments. I'm glad to know that I'm not alone in my feelings. It makes me feel like I'm a good mom. I appreciate every comment you leave.

Of course, whenever I post about my hatred of milestones, Harper hits a new one. She is signing more! I attribute this to me using it with her but really she caught on at school. And she hasn't looked back since!

Having this sign, ok well only one sign down, has made our life easier! I actually know when she wants more and I don't have to guess anymore! I'm trying to catch her on video doing this but I'm normally clapping at her with approval!

With Harper in mind, Andy and Uncle Jeffy did the Polar Plunge in Madison this weekend. This is clearly the dumbest thing the two of them have ever done (second is putting the dogs shock collar on) but it definitely was the sweetest.


Months ago these two got it in their heads that they would raise money for Special Olympics and jump in the freezing cold water. If that wasn't enough they decided to jump in as Bert and Ernie. Cue the incredibly scary costumes.

This was before we even left the house. And believe me, they were full of doubt. 

When we got there, we quickly realized that not only was the jumping into the freezing cold water in February going to suck but the waiting to jump into the water was also going to suck. Lucky for us, we were bundled up! 

Uncle Jeffy/Ernie

Andy/Bert

  

Waiting. 

More waiting and probably rethinking this idea. 

Harper was definitely not amused. She didn't make a peep. 

Apparently Jeff thought Andy was going to back out!

Cannonball! Notice the firefighter turning his head to avoid the splash! 

Done. And freezing. 

Thanks to all who donated toward the cause! Will there be a next year?! Only those two knuckleheads know the answer to that! 

Ramblings...

I know I've posted somewhat about this before but I've been thinking of this often but it's hard to explain. So here goes.....

I know Harper has Down syndrome. You know Harper has Down syndrome. But do strangers? Or do they just know there is something "wrong" with her? 

We can't leave the house without someone stopping to tell us that Harper "is the cutest baby they have ever seen!" Or "her eyes are so blue," "she's so tiny." "How old is she?" When I say she is almost 17 months, I sometimes get a look. A look that says, "hmmm, she's awfully tiny for her age. I wonder what her deal is." 

I always respond with a very kind THANK YOU and yes, she is a peanut for her age. That's it. But the voice inside my head is saying, "I can see you racking your brain to figure out what is wrong with my child." 

But I don't. Not yet anyway. I'm too nice of a person (on the outside). 

Harper had a therapy session at school on Friday and I had to leave the room. I couldn't take it. The therapist was having her do something that I didn't think she could do. I knew she was going to hit her head. Sure enough, she did. And she cried. And then I walked away. I know the therapist was pushing her to work harder. Hell, I do it too. But it was my breaking point for the day. Harper is the oldest in her classroom and all of her younger friends are getting ready to move to the Toddler room. It's not safe for H to move with. She isn't mobile enough. But I am anxious for that day to come. It means she is a real toddler. 

The last two weeks has had me shed too many tears comparing Harper's abilities to others abilities. I've posted about this before but it HAS TO STOP. I'm trying. Really I am. But it's not easy. At. All.


Good news.....I've been asked to do something awesome for an awesome company. Could I be any more vague?! More details to follow.

Happy weekend everyone!